GOD HAS A PLAN!

It can be a challenge to raise children in general but hidden disabilities really kicks that up a notch or two. In some ways I love that God has chosen me to rise to that challenge although other days I must admit that I think God has more faith in me than I think I deserve.

I know that God has a plan for me and my family and it is a great plan. He knows my children’s gifts and their challenges and He will perfect in them His will if they will submit to Him.

It is my job as a mom to model real Christianity to them. To love them and teach them about God’s love and how His love is perfect and will meet their needs. It is hard to teach children to be grateful and thank God for all things in a world that is full of discontent, ingratitude and complaint. I can’t make them love the Lord with all of their hearts but I can model what that looks like and pray that it is so attractive that they will seek that for their own lives.

Deuteronomy 6:5-9 says:  “Love the Lord your God with all your heart and with all your soul and with all your strength. These commandments that I give you today are to be upon your hearts. Impress them on your children. Talk about them when you sit at home and when you walk along the road, when you lie down and when you get up. Tie them as symbols on your hands and bind them on your foreheads. Write them on the door frames of your houses and on your gates.”

Oh Lord, may I follow your instructions and teach my children all that you have taught me. I pray above all else that my children will learn that you love them and you want what is best for them, which is their eternal good not their present happiness and that when they submit to you and accept this they will experience true joy.

~ Twyla

Easter Surprise (A Lesson in Community)

There’s a theme going in my life right now:

We  are created to live in community.

No brainer, right?

Not exactly. I have to be honest: staying in community is tough.

I used to depend on my church’s weekly women’s Bible study for my community. We stopped attending because Cami struggled so much being in a room with lots of other kids of differing ages (which meant lots of sensory input to process), it took the rest of our week for both of us to recover.

Finding community is tough not only because of Cami’s hidden disabilities. I have my own baggage and brokenness. What I’m finding lately is that both Cami and I struggle to find community and stay in community.

Because not many folks “get” us.

Our lives don’t look like any other families’ that I know of. Take our church attendance, for example. Cami struggles with crowds, so for awhile, my husband and I took turns going to church so Cami wouldn’t have to. Our local church has three services, so that solution worked for several months: Michael attended the first service and came home in time for me to attend the third service.

Then out of the blue, one Sunday Cami decided she wanted to go to church. So we took her to the service we thought would have the least amount of kids. She did okay by taking her sketch journal and drawing through the entire children’s service. She didn’t remember the Bible story or any of the activities because she didn’t participate.

But at least we were at church every week, right? At least she was in a room with kids her own age and not melting down afterwards, right?

On Easter Sunday, her Sunday school class held a VBS-type festival, so Cami chose to attend “big church” with me. I was nervous: past experiences with Cami and large crowds have seldom worked well. We chose to attend the special afternoon service because we thought it would have the least amount of people. I encouraged her to take her sketch journal, and we sat near the back on the end in case we needed to leave quickly.

Cami in big church was not what I was expecting. We were two of 624 people standing, singing, and sitting together. She didn’t sing any of the songs, even though some of them were her favorite worship songs. She drew pictures of stars and cats while our pastor preached about heaven, what it will be made of and how big it will be. I didn’t see her look up at all until it was time to leave.

Cami then spent the afternoon playing outside with all her friends, her “community.” My husband said I was trying to “manage her” that day. I think I was waiting for the meltdown.

But Cami didn’t melt down. She spent the afternoon sharing with the neighborhood kids how the City in Heaven will look like transparent green jasper; how the gates in the City wall will always stay open; how Heaven’s City will be a perfect cube with each side measuring 1,500 miles; and how there won’t be any need for the sun, moon, or stars because Jesus will light up everything all the time.

Shut my mouth.

Thank You, Jesus, that Your Word always accomplishes what it is sent out to perform. Thank You that You guide my daughter’s heart, that You choose her community, that You love her well. Lord, please, help me to trust You with my precious girl, with her hidden disability quirks that potentially isolate her. Help me to let You build her community.

And Lord? Help me to trust You to build my community, to give me exactly who I need to be my friend–even if she doesn’t look like what I expect.

Laying down my expectations for what “church” and “community” is “supposed” to look like,

Cassandra

On Loneliness

I am thankful for my friends.  But I am lonely.

Like many of you, I spend my days in a recurring pattern of living with and managing hidden disability.  It’s wearying.  It’s exhausting.  And I know that most of my friends have absolutely no idea what my life is like.

So I balance friendships.  Sometimes I seek them out.  Sometimes I hide from my friends.  I find myself in a continual balance, wondering, “How much do I share?  Do I talk about myself too much?”  Sometimes I find myself struggling to identify with my friends’ difficulties.  Sometimes I pretend things at home are OK, or are at least easier than they really are.  Sometimes I complain.

I recently spent ten days away from my family for work.  During this time, God reminded me once again of the importance of friends.

While I was gone, there was lots of turmoil at home.  I had to call several friends and even acquaintances to intervene in my home.  I called some newer friends late at night, crying hysterically.  And I realized that I don’t often open up with such vulnerability to my friends.  Despite having people I can reach out to, my challenges make me feel that much more set apart from people.  Different.  My friends can come in at a moment of crisis; I live with this disability daily.  I am painfully aware of how different my life is from theirs.

On day three of my long conference, I went into my hotel room to grab some lunch.  Sitting on the cocktail table in my suite was a cheery mug filled with yellow roses.  I thought the flowers were a gift from the hotel (I was in charge of the 7 day conference)… imagine my surprise when I found a note from a friend:  “Nancy, here’s hoping you have some time to stop and smell the roses.  Love, Beth.”

My eyes filled with tears at my friend’s thoughtfulness.  I brought the small mug of flowers into the registration room and the eyes of my co-workers lit up.  “I have friends!” I said joyfully. “I am so thankful to God that He has given me friends.”

And then, without pause, Cheryl spoke the words that so many of us often feel.  “That’s what I’m missing in my life,” she said casually.  “My husband and I hope to find friends now that we’re retired.”

I am thankful to God that I do have friends.  I have a very strong network to help support me and my family.  Yet Cheryl’s words resonated with me more than I let on.  I often feel the painful sting of loneliness.  The friends I have … well, they’re not always the friends I would choose.  The relationships aren’t always easy.  But they are the people that God has put in my life.  Sadly, I am often the one who alienates myself from friends because of the challenges in my life.

I am tempted to withdraw from people because my life is so different from theirs.  I am tempted to isolate myself from friends because they can never truly understand the difference between how things appear on the outside and how things really are.  My trials leave me feeling set apart, different from everyone else.  Friendship takes work, and I rarely have any left over energy to give to that kind of work.  But I need friends (and sometimes I need to remember that I need friends).

Hidden disabilities … it’s a world of many contradictions.  I am thankful for my friends.  But I am lonely.

~ Nancy

**PS:  I was convicted by this post and moved to step out of my comfort zone.  So I sent an email to 10 Christian women I know of in my neighborhood and I invited them to come over every Wednesday morning from 6 – 6:45am for prayer.  I’ll let you know how this goes!

Friends: I’ve Had It All Wrong!

I’ve spent a decent amount of time worrying about Stephen not having friends. In fact, I think I worry about it much more than he does. He is almost 15 years old and seems pretty confident in who he is (most of the time). When I chaperone fieldtrips for school other kids don’t try to avoid being around him. I never get the idea that he is a social pariah among his peers. Yet, I worry because he doesn’t have a close friend that he likes to hang out with.

This was the topic of conversation not long ago in the car. The subject came up because Stephen’s younger sister was expressing her frustration over a situation with a particular friend. As we talked I asked Stephen if he remembered some friendship difficulties he had experienced in second and third grade. Both times I was contacted by his teachers because Stephen was having difficulty when the friend he primarily played with wanted to befriend a new student in the class.

As we talked and laughed about these situations that happened so many years ago Stephen had difficulty remembering the dynamics of those friendships. But it led to a great conversation about what he is looking for now in a friend. I asked him flat out, “what would make a good friend to you?” I was taken aback by what he said. His answer was, “someone who doesn’t expect too much out of me in the relationship.” I’m still processing exactly what that means.

All this time I’ve been using my own definition of friendship when Stephen’s definition and expectations are completely different. He isn’t looking for someone to share hours of time and pour his heart out to. He is looking for someone to hang out with when he is bored, maybe play video games or go to the park to throw a Frisbee. He is looking for someone to call when he feels like getting out and doing something. But mostly he’s looking for someone who won’t put pressures and demands on him that make him uncomfortable.

With this new definition of friendship we can work on finding one or two guys who like to do some of the same activities Stephen enjoys and arrange some hang out time with no pressure and no demands. And, who knows … maybe something more will develop over time. And, just maybe he might develop a lifelong friendship that fits his idea of what a friend should be.

~Louise

 

Wanted: Friends

Would it look too desperate if I posted this ad in my local newspaper? Or maybe I could post my status on facebook as: Jealous that my husband is enjoying a Dad’s Night Out, and I’m home. My self-pity got even worse when my neighbor mentioned she was going out for dinner tonight with some girlfriends.

Is what I’m experiencing normal? Did you come to a point in bringing up your children when you just became so absorbed in their needs, their desires – that you lost yourself. You know – I don’t want to say it that way. I think what I really mean is that I lost my social self. Here I study social understanding, write social stories, and try to teach social skills – meanwhile I’ve lost my social life! When I had babies at home, it seemed there was more of a network of other mothers of young children. And before we had children it was easier to meet up with other young couples.

But where’s my network now? The other moms who want to enjoy a night out with friends, who don’t want to talk about their kids, who want to laugh and enjoy good conversation. Oh yeah, they too are likely picking up school papers off their kitchen counter; readying backpacks for tomorrow; going through the mail; doing laundry; thinking about how badly their house needs to be cleaned; making dinner; reading bedtime stories; doing… doing… doing.

And right on cue, another “So excited for tonight – it’s Girls-Night-Out!” status pops up on my facebook news feed. Yuck. Today…I just don’t wanna know.

Kara

What A Difference A Day Makes

In her preschool years, my attention-challenged daughter had trouble marking time, memorizing the names of the days of the week, and keeping track of what order the days were in. The first day’s name she learned was “Saturday.” (That’s the day her Daddy was at home when she woke up.) We called Sunday “Church Day” in an effort to help her keep track of where we were in the week.

It stuck.

When we moved to Virginia, my Dad and I started asking each other this question:

“How was your Church Day?”

I still call him every Sunday afternoon or evening (sometimes I wait until Monday) to get a report. He tells me about Sunday school and church, if his quartet sang (and what song), if Mom went with him or not, and if he stayed home. You know—how his Church Day was.

One week, my Church Day started late Saturday night. I was trying to catch up with my homework for our women’s Bible study. My class, “A Woman of Purpose,” used a Dee Brestin Bible study on the Gospel of Luke. I’d made it to the last page of the book’s Introduction, where Dee explains the lens through which she approaches the study:

“Did you know that Luke is the Gospel that is most empathetic to women?”

I underlined phrases like from Mary’s perspective, God astonished her, and amazed her with miracles. I read of the women being first at the tomb, running out to tell the men, and the men saying that the women’s words seemed like nonsense!

Dee says, “Jesus valued women, reached out to women, used women for vital messages, and understood women’s deepest longings.” That particular sentence reminded me of something Betsy told me earlier in the week. When she attended John & Stacy Eldridge’s Ransoming Femininity weekend, Betsy said God touched her face and told her that He delighted in her, that He adored her. I thought, “Wow. How come that’s never happened to me? I could really use something like that.” Who couldn’t?

I was in one of those tough seasons—you know the ones, when the enemy’s lies about you—to you—are incessant. He’d been calling me a bad parent, an inadequate wife, and a pushy lay minister with a know-it-all attitude. He whispered, “It’s too hard to be your friend because you’re so demanding and raw, needy and messy.” He said…well, you get it.

The truth? I was still sitting in bondage to what I perceived other people might be thinking about me.

My BFFs Betsy and Melisa spoke truth to me with great love. They pointed out the lies I was mired in, the wounds I was wallowing in, the nasty garments I preferred to the godly garments Jesus held out to me. And they were right. I had been stuck there. (But I thought I dealt with this already!!)

Untangling all the lies from the truth, finding a firm place to stand—it can be exhausting. My joy in worship-leading, in being Cami’s mommy, in being Michael’s wife, in being a Jesus-follower—pretty much gone. That Saturday night, I was mostly tired.

And my team was up to lead worship the next morning.

I wrote this prayer in the margin of Dee Brestin’s Introduction:

Jesus—please, meet me in this study. Touch my face—tell me I’m lovely to You. Please restore that wounded place in my heart that doesn’t believe I’m worthy. Of anything. Help me lay down the lies I’m wearing—wallowing in—[help me] slog through the enemy’s false puddles and run into Your truth of my significance and purpose.

Restore to me the joy of my salvation, and renew a right spirit in me.

On the next page, I circled “God is mindful of you (Luke 1:46-48).” I wrote,

Make this truth real to me, Elohim. Abba. Make it part of the very fabric of my being.

The next morning, I got ready for church thinking I had a lot more time than I did. The bathroom clock needed a new battery. By the time I headed for the car, I had five minutes before I would be late for worship rehearsal. It takes 12 minutes to drive to church. As I opened the door, the voice in my head was berating me with “You’re always late. How irresponsible! You’re wasting everyone’s time when you show up late!” I was tempted to embrace those lies—I mean, I am almost always late everywhere I go. I opened the front door to go out, breathing the prayer, “I’m sorry that I’m late again, Lord. . . .”

I stepped outside the door and looked up to see the most brilliant rainbow stretched all the way across the sky. The sky behind it was dark, like unburned charcoal. I started exclaiming, “Oh, my!” over and over. God was extra-amazing with His sky painting that morning. Here I was, thinking I was late, and it was like God said, “No, HoneyBear, you’re right on time. Take a look at this!”

I stood there exclaiming my awe and wonder at my amazing God, verbally applauding Him with every word of praise I could think of, and my neighbor walked outside to get his paper.

Now, my neighbor didn’t usually chat about the weather. He seemed gruff at times, like he preferred to be left alone. I admit: I generally tried to avoid him. But he chose that very moment to step outside for his Sunday paper. I couldn’t help it—my gushing toward God just spilled over onto his sidewalk.

“Good morning! Did you see the rainbow?”

He turned around to look at the sky. He said, “Wow.”

“It’s beautiful, isn’t it?” I said as I started down my porch steps.

When he looked back at me, his usual scowl was gone. His whole face was delighted! He said, “You know, in the over-twenty-years that I’ve lived here, I don’t think I’ve ever seen a rainbow on this block.”

I promise you, I could hear God chuckling. It was as if He was saying, “Late, huh?”

My neighbor looked back at me—the neighbor who usually didn’t make eye-contact (maybe because I tried to avoid it???)—and said, “Thank you for pointing that out to me.”

I said, “You’re welcome! Have a great Church Day!” (Yes—you could really hear exclamation points in my voice!)

I got in the car and headed to rehearsal. The CD was playing a Brian Doerksen song  He Is Here :
He is here. He is near us, in our hearts, in our minds, in our midst.
I put the car in gear and backed out of the parking place.
He is here. He is near us, calling us to trust in Him.

I turned onto the main road, and the other end of the rainbow—the one that was way south when I stood on my porch—filled up the sky above the road. I couldn’t see any clouds or sky—only rainbow. Brilliant rainbow. God-always-keeps-His-promises-rainbow.

Cast your every care on the One who gave you life.
The tears began to flow.
Lay your burdens down at His feet. Open up your heart to the Living Word of God. He is love. . . .

By the time I arrived at church, I’d already been dancing with Elohim, Triune Creator God.

And Church Day had only begun. God was just getting started.

We observed communion as part of our service that Sunday. During the first service, I sat with Melisa when I wasn’t on stage. As the pastor asked the elders to move to their communion tables, Melisa leaned over and began whispering to me. I leaned closer to listen, so I wasn’t looking at her. Just listening.

“God wants me to tell you that. . . .” She took a deep breath.

“Everything He did on the cross was for you.” And I felt it.

I felt Him touch my cheek.

“Because He loves you.” As sobs caught in my throat, Melisa’s tears plopped on my arm.

“He delights in you.” Oh.

“He is pleased with you.” Oh, my.

I hadn’t told her about the prayer I’d written less than twelve hours earlier. I hadn’t told anyone.

Except Jesus.

Hey, Pop!
(As Bill Gaither wrote,) “He touched me. Oh, He touched me! And oh, the joy that floods my soul! Something happened, and now I know: He touched me and made me whole.”

Yep. That was a pretty good Church Day.

 

How about you? How was your Church Day?

I’d love to hear about it.
Cassandra

On My Knees

My theme song for the week:

http://www.youtube.com/watch?v=Q5BnVuEl1jY

When I don’t know what I need, I need to get on my knees.  When waves of doubt crash over me, I need to get on my knees.  On my knees I find refuge, on my knees I find grace, on my knees I can feel you like we’re meeting face to face. When I don’t know what I need, I need to get on my knees.

When I don’t have strength to stand, I need to reach for Your hand. When life feels like sinking sand, I need to reach for Your hand.  In Your Hand I find refuge, in your hand I find grace, in Your hand I can feel You like we’re meeting face to face. When I don’t have strength to stand, I need to reach for Your hand.

When life leaves me with no choice, I must listen for Your voice. When lies confuse me with their noise, I must listen for Your voice. In Your voice I find refuge, in Your voice I find grace, In your voice I can feel You like we’re meeting face to face.  When Life leaves me with no choice, I will listen for Your voice.

On my knees I find refuge, on my knees I find grace, On my knees  I can feel You like we’re meeting face to face. When I don’t know what I need, I need to get on my knees.

Beautiful reminder,

Joan

Surviving Asperger Shunning

“Aside from the ‘D’ in Algebra, are there more issues I should note?” I inquired of Henry’s middle school counselor.

“There was something odd in the cafeteria this week,” she replied. “I noticed Henry sitting at a table all alone.”

My heart flipped. No, I didn’t like the fact that a kid scoring in the top tenth of one percent of the nation’s math aptitude pool was nearly flunking Algebra. But I was far more jolted by this news flash from his social scene. Henry reported that a dispute with one friend had quickly led to shunning by an entire group of boys. Now I got the sense that this was more than a normal dispute among buddies — perhaps more of a rupture.

By graduation five years later Henry still had not reconnected with those boys, who had been his anchors in their shared social network. So yes, I’d call that a rupture, wouldn’t you?

Only in retrospect could I see that such “violent rejections,” as literature describes social convulsions common to Asperger Syndrome (AS) types, were major milestones of Henry’s education.

In ninth grade, it was the sports team where he was injured during a collision with the team star during practice. Returning from the hospital emergency room, Henry made a crack critical of the “Star.” That did it. For weeks, he was ambushed before and after class and threatened by team starters outraged that some puny freshman had insulted their hero. Henry remained clueless of how a few words could have triggered such consequences. He was also scared witless – enough that we worked out a plan to engage local police if team thugs laid a finger on him.

No wonder AS personalities commonly exhibit anxiety and depression. In the AS laboratory of life with Henry, I conclude it’s not intrinsic to the condition, but is a secondary byproduct of such wretched experiences. If anything, Henry was an extraordinarily happy, exuberant young kid whose joy was contagious. He sure got that knocked out of him. Never knowing when rejection, often cruelly delivered, is going to smack you in the head is enough to infuse shots of anxiety and depression into anyone.

I’m not thrilled about it, but as a young adult, Henry has found anxiety meds helpful. Also helpful are social radar upgrades that prompt him to cool his jets, mute the next 30 minutes of his argument, and to use practical tools for managing interpersonal relations and communication. Such adjustments have enabled work opportunities nurturing maturity, competence and confidence.

With all that, I don’t know how a person struggling with such issues makes it without the cushion of a loving, accepting, supportive family.

Just today, I reminded Henry’s sister of one of his darkest periods when his behavior was especially odd, and potentially very embarrassing to a sibling. Yet when her friends were around, she invited Henry to join them. At the time, he thanked her for including him, a sensitivity that seemed unusual for him. I believe he found himself so rejectable that he was surprised to see such explicit signals of care and acceptance. I am deeply grateful for sibling warmth that has, I believe, deflected some of the heart-crushing influences elsewhere.

Now, I feel I’m watching a butterfly emerge from the AS cocoon. Glimpses of the old Henry seem to be rising from a place deep within his battered spirit. Sparkly eyes. Laughter. Hope. Steps to tackle new challenges to enhance his future prospects.

Yes, I have solid hopes for Henry, for those who love him, and for others who struggle with atypical wiring. This journey is not for the faint of heart. But in odd ways, it can prove deeply fulfilling. Where others see a Henry that walks to a different drumbeat, I see a young man with stellar intellect, with a very good heart, and with a deep reservoir of courage.

My prayer is that God will use these qualities in ways to bless – perhaps even amaze – his generation. Surprising human packages are used for heaven’s purposes, often in defiance of social norms and expectations.

I’m counting on that once again, right here.

~ Eliza

C-H-A-N-G-E

“It’s not good! No, I don’t like it! I am not going to accept this! This is so bad. Everything is ruined. No, No, No!!”

That’s the grown up temper tantrum/pity party. And I recently had one. They don’t always include tears and you name it. But this one did. I’d had it. Enough change already! My head can’t handle any more change. I don’t have the answers anymore. Maybe after one change I still had it together. But now the bottom has fallen out. My neatly stacked, perfectly built Everything At This Time – are just right. I don’t want this change.

But it’s happening anyway. And I can look outside of myself and see that each thing changing around me is better, for that person. I can fully understand why people (your child’s therapists, teachers, support staff, caregivers, doctors) have job changes, why people have to let go of certain jobs or shifts for the priority of their family. I get it and I fully appreciate it. But when it hits you over the head and across the chest for the fifth time when you thought it couldn’t possibly get any worse – ugh. You just sink.   And I sunk.

But when you sink you have the opportunity to reach out and take in the support and love from others. I sat there crying so hard wishing I had someone to lean on, a physical person. I knew God is and will be my ultimate comforter. I felt somewhat selfish wishing I had the perfect friend to call and go see in the flesh at that moment. But that is what I needed. And God created us in this way and He created us in a way that we can be comforters to others. I want to encourage you to lean on Chosen Families and the bloggers here when you need a friend who “gets it.”

Kara

“That’s MY Seat!”

Stephen has a certain seat at our table. The only time he sits elsewhere is when the entire family isn’t eating together—then he’ll sit in his dad’s chair at the head of the table. There was an instance not long ago that emphasized the fact that the seating arrangement is and most likely always will be an immovable obstacle with our son.

Our 17 year old son had a couple of friends over to play cards. Our two younger children enjoy playing with them and everyone sat at the table as they came into the room wherever a seat was open. Stephen sat at one end of the table while one of the friends sat in Stephen’s customary seat. There was no problem until pizza was being served and the game time turned into a meal time. It was at that moment while the friend was up getting his pizza that Stephen assumed his usual seat at the table. When the friend returned to his previous seat he told Stephen that he had taken his seat. Our son refused to yield the chair to the guest. He said it was his seat and the friend could sit at the end of the table. Thus began a game of the friend taking Stephen’s pizza and trying to convince Stephen to move.

Let me remind you that we are talking about a 17 year old and a 14 year old arguing over a particular seat at the table … it seemed very silly. We have always tried to teach our children to give preference to others, especially guests, but that lesson has been especially difficult for Stephen (I haven’t given up on him learning it, but I realize it may take my entire life!) My husband and I tried to no avail to convince Stephen that he should let his brother’s friend sit in his seat this time. I secretly hoped the friend would see the whole matter for what it was and let Stephen have the seat. But that was not going to happen either. After a painfully long time waiting for Stephen to make the right choice and let the friend sit in his chair my husband gently pulled Stephen out of the chair and left him lying on the floor. Amazingly, Stephen didn’t have a melt-down and after a brief moment he got up from the floor and sat in another seat.

As ridiculous as the whole matter may seem to us, sitting in HIS seat is important to Stephen. It is part of the stability and comfort of his world. Since knowing what to expect and the order of things gives him a sense of security in his environment, perhaps we should do what we can to preserve the ‘sameness’ that he needs–even if it means reserving his chair at the dinner table.